It’s Day Four of the #whatwouldyougive challenges, and as was the case last year, my favorite part is reading the reactions of the team members to their loss of abilities. I’m contending with my own latest issue, which is the almost complete loss of my voice — not a result of ALS, but of a simple cold. The dictation software and I are struggling today, and every time I try to use my hands to correct a mistake, I feel like they might as well be webbed. Hitting a single key correctly is nearly impossible. So I’m extra happy to share the words of some of our incredible team members.
“I’m not as introverted as I thought. When I first thought about giving up my voice as a self-described introvert, I thought “this is going to be easy.” I can not talk to people all day. I was dead wrong. Beyond just saying, “Hello…how are you?” (Have you been alright?), I found I really did want to talk to people, ask questions, respond to questions, state an opinion. You know, be a human being. It was fairly painful and brutal not being able to engage with people.” — Rob Becker, on giving up his voice (read more about Rob’s challenge here)
“Today was spent in a wheelchair. I crashed, was forced to sit indelicately and uncomfortably..my back was killing me, opening doors sucked, and people stared at me. This was just one day. I was able to stand, put the chair away, and drive home. My friends with ALS don’t get to do that.” — Carol O’Keefe Hamilton, on giving up her legs
“Only 3 hours into the #whatwouldyougive to End ALS challenge and realizing just how much I talk to MYSELF!!! This is already proving to be difficult.” — Krissy Daily, on giving up her voice
“In the last 30 minutes, my 3 year old woke up and all I can hear are questions to Anita as to why I’m in the bathroom so long. He’s so confused. Now, imagine someone like Sarah Coglianese, whose 6-year-old cutie likely spends each day filled with questions. Why is my mom in a wheelchair? What’s taking her so long in the bathroom? Why does my dad have to help feed her? Why can’t she brush her own hair? How come I can do it for myself but she can’t?
WORDS. FALL. SHORT.
Dammit, this is fucked up.” — Colette O’Neill, on giving up her bowel muscles and sitting on the toilet for four hours
“Though it has only been a few hours I already feel a glimpse of the isolation that comes with not being able to use your voice. It has raised the bar on what I feel I need to communicate: it turns out most of the things I would have thoughtlessly tossed out there with my voice don’t feel worth it to type into my phone. My communication has already become reduced to fulfilling basic needs rather than having a personality or just having a random thought to share. I can only imagine how difficult it must be for those who lose their voices to ALS to really feel like themselves even with the best speech assist devices.” — Ellie Moss, on giving up her voice
“Feeling like a fraud. Feeling goofy. Feeling old. Feeling as unsexy as humanly possible. Feeling angry. Feeling sad. Feeling grateful. Feeling guilty. Feeling like cheating.” — Jenna White, on giving up her legs and using a walker
Please consider donating to ALS research. #whatwouldyougive
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